92. Evidence submitted by the Socialist
Health Association (PPI 123)
The Socialist Health Association was founded
in 1930 to campaign for a National Health Service and is affiliated
to the Labour Party. We are a membership organisation with members
who work in and use the NHS. We include doctors and clinicians,
managers, board members and patients. Our interest in patient
and public involvement is longstanding. Our members campaigned
for democracy in the NHS in the 1930s and 1940s and for the establishment
of Community Health Councils in the early 1970s. Many were CHC
members and many are now members of patient forums or act as lay
members on various bodies including both the GMC and local pharmacy
committees. Our members are involved in a wide variety of consultation
and involvement processes in health and social care. This submission
is made on behalf of the Association.
1. What is the purpose of patient and public
involvement?
There are many possible answers to this. And
or course there are many sorts of involvement at different levels
and for different purposes. We would hope the committee are familiar
with Arnstein's Ladder of Citizen Participation.[59]
We would like to see less tokenism and more citizen control, to
use Arnstein's typology.
Firstly there seems to be good evidence that
in a more diverse society it has become difficult for healthcare
providers to devise services which are appropriate for all sections
of the community without explicitly involving them in planning
the provision and ensuring that effective mechanisms exist to
communicate their concerns and experiences of services. The second
answer is that citizens are entitled to have a voice in the expenditure
of large sums of public money on their behalf. Existing systems
of local democratic accountability are grossly inadequate. PPI
might not be so necessary if there was sufficient local democratic
accountability. "Our public realm needs structures and strategies
that can enthuse and empower every individual and every community
to participate." (Involve). For any organisation providing
services to the general public, whether government owned, a voluntary
organisation, or a commercial enterprise, it is vital for its
success to have its performance constantly reviewed by its users.
At a collective level, it is about patients being involved in
designing new services and improving current ones. At an individual
level, it is about shared decision-making. Because of the difficulty
of getting informed responses from many patients (because of their
condition) the involvement of a robust, knowledgeable and independent
public & patients organisation is a necessity. Furthermore
health is not a commodity to be purchased or just a service to
be passively enjoyed. People need to be positively and actively
involved with their own health and this requires opportunities
for both collective and individual involvement. There is widespread
evidence that the information component of healthcare in the UK
is the part which is least effectively delivered and improving
this requires active patient involvement.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
The idea that PPI structures should relate to
an area, rather than to specific healthcare institutions seems
sound, but there will some operational complications: if the LINK
for Cumbria, for example, wanted to investigate services for premature
babies then those services are largely provided in Manchester
and Newcastle. Some of the PCT areas are now very large and there
will be considerable difficulty in organising face to face meetings
for people across, for example, the whole of Devon. It will be
necessary to facilitate arrangements whereby all the communities
which use a particular service can be brought together. The network
of LINKs will need to spread out beyond the area of an individual
LINK.
PPI structures need to relate especially to
disadvantaged sections of the community. They must be given the
means to relate to people with sensory or language difficulties,
people with dementia and those confined to their home or to an
institution. It is particularly important that they can reach
those who have more than one disadvantage—elderly Asian
ladies for example. This probably means that they will have to
work with voluntary organisations who will have the right contacts.
The blocks at the shared -decision making level
are partly to do with doctors/clinicians. Clinicians need incentives
and training to get better at supporting patients in making more
decisions themselves and caring for themselves better. Patients
do actually find this quite difficult territory, too. The system
does not incentivise people on the ground to make use of PPI.
If it was monitored vigorously, if it really involved local people
on the ground, if it was structured to make a difference, it would
work much better—it could change the face of the NHS. The
solution for both doctors and patients is to acknowledge the truth
that nobody can look after anybody-else's health, and, whoever
you are, your health is your own responsibility. This is the message
in the Expert Patients Programme course. Liam Donaldson, the Chief
Medical Officer has rightly called for it to be provided for all
the 17 million chronically ill patients in Britain. However, doctors
are resisting it as they see it as the end of their ability to
dominate their patients. Historically, doctors have had a monopoly
on their knowledge of diseases. They have guarded this jealously
as their stock in trade which gave them power over their patients.
However, with the growth of the internet and complementary and
alternative therapy, their monopoly is breaking, and many patients
are now more knowledgeable than their doctor on their particular
condition. The development of self care requires from clinicians:
— a new way of handling consultations;
— a new way of handling their practice;
and
It is not clear at present whether equalities
legislation applies to the activities of organisations like Patient
Forums which are composed of volunteers. We think that it should,
but there are clearly resource implication if people with for
example sensory disabilities or lack of English language are to
be fully involved. This would require not only, for example, money
to pay for interpreters or personal assistance, but also training
for those not so disadvantaged in how to work with these communities.
It is very hard to demonstrate value for money
because of the difficulty of connecting outcomes to processes
and structures. The Department of Health apparently spent £1
million on the "Your Health Your Care Your Say" process,
and this does seem to have reached people who are not often involved
and been regarded as a success, but we cannot expect resources
on that scale very often. Involving people from very disadvantaged
groups—deaf people for example—can be very expensive,
but the most disadvantaged people are exactly the people whose
voices need most to be heard. It would be helpful if the Government
could clearly define what it wants the system of PPI to deliver.
Without this there is no means to judge if the system fails. If
such a definition can be produced then we suggest that arrangements
should be made to review the operation of the new system in five
years time, by which time it should have had an opportunity to
prove itself.
A great deal of money is presently spent by
individual NHS institutions on one off consultation processes.
Often the outcome is predetermined and the consultation is a waste
of time and money. Often there is little useful information provided
(especially about money) and the consultation documents are bland
and evasive if not downright dishonest.
We would argue that PPI structures need to demonstrate
first independence and second continuity. We deal with independence
below. Continuity should extend in time, in personnel, in place,
across institutional boundaries, and across communities. What
is needed is a mechanism which can connect communities of various
kinds to the decision making structures and which transcends institutional
boundaries in a way which provides resources independent of the
interests of the various institutions. Only small numbers of people
will have a continuing involvement with these mechanisms but there
need to be ways for the wider community to raise concerns and
to enable communication with the public. Organisational stability
is important for structures largely populated by volunteers. It
requires a considerable input of time and effort by lay individuals
to begin to comprehend the NHS. It is particularly important for
the PPI organisations to have a collective memory given the transient
nature of many health organisations and this is largely provided
by the employment of professional staff. We would like to see
some investigation of differing practices in Scotland and Wales
to see if lessons can be learned across the national boundaries.
3. Why are existing systems for patient and
public involvement being reformed after only three years?
Because Ministers like to give the impression
they are doing something, because the systems they established
in England in 2003 have not been very effective and because it
is now quite clear that the abolition of English Community Health
Councils was an expensive mistake. Regardless of the reason for
this change we hope that more will be taken over the process this
time. It is important to retain the skills and experience of staff
and volunteers and the records of organisations. We see no reason
why CHCs could not have been reformed, nor why Patient Forums
have to be abolished when they also could have been reformed
4. How should LINks be designed?
Remit and level of independence
The remit of LINKs should extend to health and
its wider determinants, as well as health and social care.
If LINKs are not perceived to be independent they
will have no credibility. Under the present proposals the most
obvious threat to their independence is their relationship with
the sponsoring local authority who will be responsible for managing
the contract under which the support staff are to be employed.
Experience tells us that some local authorities are capable of
manipulative behaviour when local political interests are involved.
Under the CHC regime it was not unknown for voluntary organisations'
funding to be threatened if their representatives did not vote
the way the local council wanted them to. It is therefore important
that the process of managing the contract is protected from political
interference by establishing a transparent process and a fixed
timetable—we suggest contracts should normally last for
five years and any change should be agreed by the LINK, and not
just by the local authority. As an additional safeguard, the contract
should not be awarded to any existing group which enjoys major
funding from the local authority concerned.
Membership and appointments
It is not clear what is meant by membership
of a LINK organisation, given that there are to be both individuals
and organisations in membership. The Department of Health envisage
a LINK as a network. For many purposes a flexible participative
process will be necessary and desirable, but there may be times
when a decision will have to be made about which there will be
different points of view. It may be necessary to define a core
membership in order to permit democratic decision making. We would
suggest that there should be a requirement that every person who
participates in the work of a LINK should be required to be normally
resident in the area of that LINK (although of course the work
of a LINK may lead to investigation of services provided for their
residents by organisations many miles away). We would not want
to see a system whereby people represent organisational interests
as a member of a LINK nor any kind of block voting system.
It may be better to accept that membership is
entirely voluntary and self selecting rather than to establish
some sort of vetting body which has been a source of substantial
problems for Patient Forums. This would mean that the collective
voice of a LINK would only have more weight than the voices of
the individual members if it could demonstrate wider involvement,
particularly of disadvantaged groups, or enhanced expertise. In
reality the response of a LINK to many consultation processes
will be based on the experience and knowledge of its members.
There will never be sufficient resources to involve the wider
public and the most disadvantaged people in every issue. We suggest
that if LINKs make official responses they should be required
to state what processes informed the production of that response.
We would envisage that all lay people who have any sort of representative
role in the arrangement of health or social care services in the
area would automatically be a member of their local LINK.
It is important to recognise the increasing
diversity and fluidity of the voluntary sector if these organisations
are to be brought into LINKs. Many voluntary organisations will
have financial interests in the provision of services in their
area and it is important that these interests are declared and
that these interests do not contaminate the voices of voluntary
organisations representing their communities. Under previous legislation
NHS employees and contractors were not allowed to be members of
CHCs or Patient Forums. If such a prohibition is to continue then
it should probably extend to any person with a financial interest
in the provision of health or social care services in the area
of the LINK. If the prohibition is abandoned then there will need
to be a mechanism to register the declaration of interests. It
will be very important that LINKs adhere to the Seven Principles
of Public Life established by the Nolan Committee and it will
be necessary to ensure that there is some mechanism for dealing
with complaints about this. There may be lessons to be learnt
from the experience of the Standards Board for England.
We think that there is considerable potential
for using internet based mechanisms for collecting the experience
of patients, helping people to communicate with each other and
to enable, for example, people who are housebound to participate.
Funding and support
LINKs need to be in a position to employ professional
staff with experience in community development and of how the
NHS and social care work. They will also need people with good
IT skills. It may be helpful for one organisation to support several
LINKs, or for specialist organisations to deal with particular
aspects of the work over a wide area. There needs to be organisational
stability and a career structure if highly skilled staff are to
move into this work. The staff should be accountable to the LINKs
whose members should be involved in any appointments.
We would want to see a very transparent funding
regime. On balance we think funding should be directly related
to population and not weighted for deprivation, rurality or any
other factor. If there is a national budget of say £25 million
for the population of England that works out as approximately
50 pence per head per year. Such a simple formula would make it
easy to see whether the money is reaching its intended destination.
We suggest that if it is thought proper to make specific funding
provision for particular sorts of deprivation or activity that
this should be provided separately. We do not see that it would
be possible to produce a formula which would take account of all
the different factors which might make involving people in a particular
area more expensive than the average. We see no reason why service
providers or commissioners should not pay LINKs to conduct consultations
or other projects on their behalf just as they often pay freelance
consultants now, although we might need to ensure that the independence
of the LINK was not compromised.
Areas of focus
We would wish to see LINKs have a wide remit
to deal with all sorts of health and social care topics in their
area—including all those issues which affect the health
of a population but are not the direct responsibility of the NHS.
We would envisage LINKs as having a particular
role in fostering the development of local involvement mechanisms,
in particular localities, among particular communities or with
individual practices or providers. This should certainly extend
to an involvement with Practice Based Commissioning which up to
now has had little patient involvement.
Statutory powers
We consider that LINKs should in themselves
have some statutory powers over and above the powers available
to the public in general. The main legislative change needed is
to give PPI representatives more power. They need statutory rights
to sit on, speak and vote on all NHS committees concerned with
patient care. Patient representatives need support in what is
a tough job. On each committee there should always be establishment
for at least 2 patient representatives, so that they can support
each other. If for any reason a PPI rep cannot be present at any
meeting, they should have power to appoint a deputy or a substitute
so that there is never a vacant chair.
In addition we would want each LINK to have
access to the detailed terms of any contract for the provision
of health and care services to people in its area. We understand
that there will be objections to this on the grounds of commercial
confidentiality but in our view openness is part of the price
of undertaking publicly funded work. We would have no objection
to some provision making commercially sensitive information subject
to confidentiality for a limited period. We think that the proposal
to give nominated LINK representatives rights of access to health
providers premises on the basis that only those nominated will
have CRB checks is a sensible compromise, and that right of access
should extend to any provider of services.
One problem which may inhibit the relationship
between patients and a LINK is the existence of the systems to
regulate medical research. We would wish it to be made clear that
enquiries made to competent patients who are capable of understanding
by a LINK about their experience of health and social care services
does not constitute medical research and does not normally require
ethics committee approval.
Relations with local health Trusts
If the NHS is truly going to embrace diversity
of provision then we would want to see LINKs relate primarily
to the commissioning bodies and for their remit to embrace providers
of all sorts. This will clearly include existing NHS Trusts and
these Trusts may not necessarily be located in the area of the
LINK. The remit of each LINK should relate to the services provided
to people resident in their locality, wherever those services
are provided. We would expect NHS Trusts to establish positive
relationships with local LINKs but in our experience these relationships
need effort from both sides. We are glad to see that effective
PPI skills are beginning to be regarded as important to NHS managers.
We would expect a LINK to establish a group to relate to each
significant provider of services for its local area.
National coordination
A national and regional organisation will be
very important for the success of LINKs, and the lack of it has
contributed to the weakness of Patient Forums. However the national
and regional organisations must be answerable to the local LINKs,
and not the other way around. Members of LINKs must be enabled
and encouraged to communicate with each other across the country
so that specialist issues can be addressed. Development of standards
of conduct for LINK members for example should come from the bottom
up. We would envisage mechanisms whereby representatives of patients
of all kinds, including voluntary organisations, at regional and
national level would relate to these bodies. We also hope to see
the emergence in due course of regional and national leadership
capable of expressing the patients' voice and of coordinating
and directing campaigns relating to patients experience so that
if some future Secretary of State wants to declare that the NHS
has had its best year ever there will be a credible patient voice
able, on the basis of evidence, to confirm or deny such a claim.
5. How should LINks relate to and avoid overlap
with:
Local Authority structures including Overview
and Scrutiny Committees
In our experience Overview and Scrutiny Committees'
effectiveness in relation to health varies very widely according
to local political and geographical circumstances. We would like
to see measures to bring more of these committees up to the standards
of the best, and often this is down to the nature of the officer
support provided. We would not want to see the effectiveness of
a local LINK impeded by a local authority structure which is determined
by its own political interests but we do think that there is potential
for LINKs and Scrutiny Committees to work together constructively.
However in some local authorities the Scrutiny Committee is incapable
of providing an effective challenge to service provision of indifferent
quality.
Foundation Trust boards and Members Councils
As yet the impact of the democratic arrangements
for Foundation Hospitals is difficult to assess, but most of those
involved report that as members or governors of a Foundation Hospital
they perform a purely decorative function.. There is clearly potential
for using those mechanisms to improve consultation and involvement
of patients with hospitals and this may be useful for the relatively
small number of people whose care is delivered primarily by a
hospital. We would expect Members Councils to relate to their
local LINK. However the central political problem in health is
the excessive political power and visibility of hospitals, particularly
acute hospitals, as opposed to the invisibility of primary and
community services.
Inspectorates including the Healthcare Commission
The efforts the Healthcare Commission and CSCI
have made to date to involve patients in inspection arrangements
are very encouraging and merit further development. We see the
Commission as a powerful ally in the development of involvement
and we want to see this role strengthened. We would like to see
other bodies with inspection rights emulate their approach. LINKS
should be recognized as working alongside the professionals in
providing lay members for formal inspections. We would hope to
see LINKs developing an independent voice for patients who may
want to raise concerns different from those developed by official
bodies. We also see LINKs as able to react much more quickly to
local problems and much more able to deal with problems which
cross institutional boundaries.
Formal and informal complaints procedures
The separation of complaints work from the work
of patient forums has been a source of weakness as compared to
the regime of the best CHCs where complaints contributed to a
detailed picture of the performance of local health services.
We understand that there are concerns about the confidentiality
of complaints procedures but we consider that some mechanism must
be devised to ensure that local LINKs (or possibly some designated
committee of a LINK operating on a confidential basis) has access
to information about complaints which is sufficiently detailed
to enable LINKs to know which specific services give rise to complaints.
There may also be a role for LINKs to protect patients who complain
as there are still widespread allegations of victimization.
6. In what circumstances should wider public
consultation (including under Section 11 of the Health and Social
Care Act 2001) be carried out and what form should this take?
The proposed amendments to what is now section
242 of the National Health Service Act 2006 appear to envisage
much more general consultation than has previously been required,
and we welcome that. We hope that the shameful practice where
changes required to be introduced by the Department of Health
are excluded from the duty of consultation will now cease. However
it will clearly not be possible for every change to be subject
to substantial and expensive consultation exercises. We would
like to see decisions about the arrangements for consultation
under section 242 taken locally in conjunction with the local
LINK which could take into account a wide range of factors, including
the capacity of local communities to respond and the relative
significance of various proposals. We would certainly like to
see the end of the ritual publication of glossy consultation documents
relating to decisions which all those concerned know have already
been taken. "The essence of consultation is the communication
of a genuine invitation to give advice and a genuine receipt of
that advice." In our view consultation, to be effective,
needs to take place early—while the consideration of possible
options is taking place. If the proposals for the establishment
of LINKs are to be effective we would like to see a situation
where those involved in their local LINK are not surprised by
the announcement of any proposal for substantial changes of service
in their local area because they will have been involved at an
early stage.
Martin Rathfelder
Socialist Health Association
10 January 2007
59 Arnstein, Sherry R., A Ladder of Citizen Participation,
JAIP, Vol. 35, No. 4, July 1969, pp. 216224. Back
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